In DC this week for the annual PPR Summit — and just when you think you’ve heard it all about breaches of privacy and our lack of control over our own data, each year there are new findings which reveal how low we have sunk. A Utah police officer on a major data-fish downloading the prescription data for every employee in a paramedical group to see who is receiving what treatments in an effort to generate suspects in a possible minor loss of medication. Your own health data being sold and accessed every day is now a reality. Your searches on specific health issues being used to flag you as ‘concerned’ and therefore subject to targeted marketing and worse. Lots of hot air from the White House about ethics and health data while simultaneously surveilling every citizen.
Depressing as the stories may be, the bigger problem seems to be finding common ground on solutions. I’m hearing a lot from lawyers and policy specialists but little from the perspective of the consumer like you and me, other than how negatively we are impacted. The law will prove important here but in one sense the genie is out of the bottle and it’s hard to see how ordinary people can engage in meaningful acts to control their own data. I think the doctor-patient interface is going to be crucial but the complicated nature of the processes involved and the profits involved in capturing and mining this type of data presents some real challenges in designing better information systems.